A review of Unrest by Clare Norton

Stonebird is immensely proud and grateful to publish Clare Norton's insightful review of Unrest. Her beautiful daughter, Merryn, died age 21, just this year.

There is no doubt, Unrest is making an impact in the UK, attracting desperately needed media representation for ME, both on TV and in mainstream newspapers.

The film is a fantastic achievement, it is extremely good news to know that Unrest was screened in the House of Commons and got such a good reception from MP’s.

However, there are also concerns. Though it is helpful to make the film more widely available, the cost, £12.99 on iTunes, is considerable for people on very low income. I cannot travel to a screening for my wife is far too ill and cannot be left.

The experiences of the most severely ill , I understand, are not well represented. Please see Clare Norton’s review.

I am extremely concerned that some quotes in the daily tabloids raise the possibility of huge misunderstanding.

The final sentence of the Times article, for example, :”“Sometimes you have to live and then you pay for it. If you don’t, then what are you doing with your life?”is bizarrely opposite to what people with ME need. This sentence alone, really upset my wife, who lives a tortured existence and absolutely cannot, nor should try to live her life then pay for it.

Anyone with knowledge of the severest forms of this illness would know just how dangerous and impossible that is.

A Telegraph reader might be forgiven for thinking that at its worst ME is still fundamentally about exhaustion. This is simply not the case.

On Stonebird, we suggest a more appropriate way to embrace any action is the MOMENT approach. To try to be aware of ‘when you can, when you cannot and when you might.’ Much patience and waiting is involved for even the most tiny interaction, wrongly timed can have far reaching consequences and negative impact.

The tortured reality of Severe ME, incomprehensible to most, sadly is still invisible.

As Clare Norton asks : " What other illness gives the least attention to the worst affected?

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A REVIEW OF THE 2018 EDITION OF THE ME ASSOCIATION CLINICAL AND RESEARCH
GUIDE FOR ME/CFS
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The MEA recently kindly sent me their "Purple Book" for review. It is so good that my well-thumbed copy now occupies a privileged, permanent place beside my computer. I have only had it two days and cannot live without it!

If you have ME then this is a profoundly useful overview of the disease.

If you want to research into or know more about ME, then you will want this treasure trove of information with its stunning coverage of Terminology, Epidemiology and co-morbidity, Medical Research, Management including pharmacological and non-pharmacological treatments, Prognosis, just to name a few of the areas .

The famous Purple Book is a gripping read!
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